Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

I think the Sonya Chowdhury/Action for ME letter is well pitched for a Newspaper context. I hope it gets published/posted. I look forward to the various more considered responses to the journal article too.

I was wondering if the timing of the paper and the KCL press release was deliberate or just a chance consequence of the Journal’s review process. Didn’t the BPSers previously launch an ME related PR campaign in the lead up to the news reporting silly season, when the lead science and health editors may be on holiday but the papers are also on the look out for page fillers?
 
Peter Trewhitt said:
Anecdotally GET as practiced by individual clinicians across the UK specialist services seems to be variable from those rigidly implementing fixed increments right through to something that might be more akin to pacing, which rather suggests many/some clinicians were already uncomfortable with GET as recommended by the replaced 2007 Guidelines. So what is being advocated here is not GET as previously recommended by NICE and is not an evidenced based treatment, but rather an approach based on clinical experience, ie anecdote, the very grounds that the authors use to reject the evidence of harm.
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All of which, in most cases, is entirely irrelevant since the vast majority of patients will never actually go through a GET program and instead be simply told to exercise, a bit more each time. It is completely cynical and asinine to pretend that how it works in reality is irrelevant. It's how it's used in real life that counts, not bubble experiments that bear little relation to reality.

And of course most patients will already have tried that before they even see a GP. This is widely reported and extremely cynical to pretend it isn't. It's even common in some papers, the latest Knoop one even says so, that patients' activity levels are actually not an issue, even as they make it the target they mean to fix.
 
I’m looking forward to reading NICE’s “detailed response” to the JNNP analysis, referred to in the Guardian article. I hope it doesn’t disappoint.

When I complained to BBC and Ofcom about that dreadful The Life Scientific interview with SW in 2017, one of the reasons my complaint was rejected was because SW’s views on treatment were supported by NICE and the CDC. It is both ironic and a mark of the progress [we’ve made] that NICE is now being attacked by the BPS enthusiasts.

Jonathan Edwards said:
'Nobody uses the treatments as described in PACE now anyway.'
To which a well known patient advocate and subsequently a well known NICE officer replied something in the line of - 'well then current CBT and GET practice has no evidence base at all.' only better phrased.
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I can’t remember, was the round table meeting minuted or recorded?

Jonathan Edwards said:
What Peter White does not seem to realise is that if anyone tries to raise his 8 arguments in a room full of intelligent people it rapidly becomes clear how hopelessly muddled, irrelevant and contradictory they are
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Unfortunately this doesn’t seem to apply in a room full [of] eminent people.

The frustrating thing for me is how many supposedly intelligent people appear to have been oblivious to the muddled thinking of PDW and colleagues. In some cases that may be because they aren’t very intelligent but more often I think it’s because they don’t care or have personal or professional conflicts of interest. Intelligence should not be assumed to correlate with integrity or decency.

Also, I think it was James Randi who said that in his experience scientists could be the easiest people for illusionists to trick. I think he suggested that they tended to be more credulous.

What I don’t know is whether PDW and co genuinely believe in what they say anymore. Perhaps some do and some don’t but don’t have the courage or incentives to defect.

Having NICE on our side is significant progress. If former BPS proponents were to start to defect, that would surely be the beginning of the end.
 
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Robert 1973 said:
Unfortunately this doesn’t seem to apply in a room full [of] eminent people.

The frustrating thing for me is how many supposedly intelligent people appear to have been oblivious to the muddled thinking of PDW and colleagues. In some cases that may be because they aren’t very intelligent but more often I think it’s because they don’t care or have personal or professional conflicts of interest. Intelligence should not be assumed to correlate with integrity or decency.
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Evidence of exactly what you say is the strong support given by four Colleges of Medicine for the Lightning Process in their submissions to NICE during the guideline development process. Brian wrote a very nice blog about it
Self-styled medical leaders defend neurolinguistic processing as legit treatment for ME/CFS

For example:
In their submission to NICE, the Royal College of Psychiatrists are more careful in presenting their point. They open with this:

The College has no experience of Lightning Therapy [sic], and it is not an approach that as far as we know is used by our members. (p. 1215)

But then they quickly escalate to this:

But we are troubled by the decision to reject it. It is supported by a single controlled trial…The trial results were favourable to Lightning Therapy [sic]…We do not think that this decision was reasonable, and that the decision to drop Lightning Therapy [sic] was disproportionate [sic] to the evidence. (p. 1216)

(I’m sure that they meant to say “proportionate” there, as their meaning is pretty clear.)

Once again we have a Royal College speaking up for the Lightning Process, despite not having any experience of it (and not knowing its name). One would have hoped that the members of such an esteemed institution would, dare I say, read the literature on LP before commenting.

To re-cap, LP practitioners purport to cure people’s illnesses by getting them into a hotel for three half-days, charging them the guts of a thousand pounds, and teaching them how to re-programme their brains. The one randomised study to appear in the literature (in thirty years) is hopelessly flawed. LP is not science-based medicine, it is antiscience-basedmedicine.

Worth mentioning again: this lobbying on behalf of pseudoscience was submitted by THE ROYAL COLLEGE OF PSYCHIATRISTS.
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I continue to find it hard to believe that those 4 UK medical colleges as a whole are really on board with the way White et al are carrying on. It will be interesting to see just how far they are prepared to go out on a limb to support these people. My impression from the report of the Roundtable is 'not very far'. Surely some of the decision-makers in the Colleges understand that this defence of poor science makes them look silly. Perhaps that is a weak spot that can be prodded a bit?
 
Jonathan Edwards said:
'Nobody uses the treatments as described in PACE now anyway.'
To which a well known patient advocate and subsequently a well known NICE officer replied something in the line of - 'well then current CBT and GET practice has no evidence base at all.' only better phrased.
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And if, as the Dutch have informed us, physical activity has nothing to do with fatigue, what is the point of GET in the first place? Why increase physical activity if it is irrelevant to how people feel???
 
Hoopoe said:
Why are patients even in treatment if the fatigue is not related to activity levels? They could just do whatever they wanted regardless of how fatigued they felt.
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It's about how the activity levels are measured. Lots of healthy people with sedentary jobs might only walk 4000 to 5000 steps a day. A person with ME/CFS mild enough to participate in a trial that requires going in to a clinic might also do this many steps, in order to meet the bare minimum of activities of daily living and obligations to family. The person with ME/CFS will typically have cut out most of anything extra in their life - so little time spent sitting socialising, the job given up because they can't concentrate for long enough. The steps they take may be slow and short, perhaps more like shuffling sometimes. The time that is not spent walking is more likely to be spent lying down than the healthy sedentary person.

And there's no capacity to increase from that number of steps without consequences - the person feels as though they are operating at the top of their current capacity every day. If they do more, they crash.

We've discussed that a bit more on the recent wearables technology thread. It is a tricky but important thing to talk about - this idea that yes, the step count for a person with mild ME/CFS can be in the normal range, but the activity levels defined more broadly are decimated.
 
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dave30th said:
And if, as the Dutch have informed us, physical activity has nothing to do with fatigue, what is the point of GET in the first place? Why increase physical activity if it is irrelevant to how people feel???
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Never forget the first rule of cognitive behavioural therapy for post-infectious diseases i.e. their treatment is always affective, no matter the outcome of their study. And then the rationale is changed accordingly.
 
Hutan said:
It's about how the activity levels are measured.
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I think the claim that fatigue is independent of activity levels is based on the observation that fatigue questionnaires show improvement with CBT but activity does not increase. One interpretation is that fatigue is independent of activity levels. The other interpretation is that CBT is training people to rate their fatigue as improved while nothing has changed in reality.

But if fatigue is independent of activity levels, then patients could just be doing whatever they wanted even with maximum fatigue scores. It's obviously complete nonsense.
 
Hutan said:
Surely some of the decision-makers in the Colleges understand that this defence of poor science makes them look silly. Perhaps that is a weak spot that can be prodded a bit?
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I fear not. These days decision makers in Royal Colleges are almost entirely airheads. They will not realise how silly they look because they do not actually get the arguments.

As has been pointed out a room full of intelligent people is not the same as a roomful of eminent people. Intelligent people are relatively hard to come by outside S4ME.

I sometimes wonder if an outgoing officer at NICE set this all up to get his own back on a load of up themselves idiots who had been giving him grief for a very long time. Somewhere along the line some of those rare intelligent people were put into key roles.
 
As has been said, how can it be that some of these people have treated people with ME, but understand so little about the condition?

It must take an exceptional ego and an exceptional lack of intellectual curiosity to miss so much, both in terms of the academic debate and the lived experience of a patient group that you have worked with over decades.
 
Peter Trewhitt said:
I think the Sonya Chowdhury/Action for ME letter is well pitched for a Newspaper context. I hope it gets published/posted. I look forward to the various more considered responses to the journal article too.

I was wondering if the timing of the paper and the KCL press release was deliberate or just a chance consequence of the Journal’s review process. Didn’t the BPSers previously launch an ME related PR campaign in the lead up to the news reporting silly season, when the lead science and health editors may be on holiday but the papers are also on the look out for page fillers?
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Good point about silly season approaching and whether any who might be able to provide friendlier articles might be able to bear that in mind and provide a few alternative spoon-feeds
 
Peter Trewhitt said:
I was wondering if the timing of the paper and the KCL press release was deliberate or just a chance consequence of the Journal’s review process.
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No, the press release is written when an article is published (usually if it's deemed as high impact and might be reported on in the media) by someone in the department/at the university. Most universities do this. Nothing stange about it.
 
Peter Trewhitt said:
As has been said, how can it be that some of these people have treated people with ME, but understand so little about the condition?

It must take an exceptional ego and an exceptional lack of intellectual curiosity to miss so much, both in terms of the academic debate and the lived experience of a patient group that you have worked with over decades.
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Cognitive dissonance seems to be a pre requisite
 
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